The MND Research Collective is a concept co-designed with around 50 experts from lived experience, medicine, healthcare and research. The MND Research Collective is not a new entity or organisation, but rather the coming together of existing groups, organisations and stakeholders under a shared focus and vision and with a common agenda.
From this shared goal and focus The MND Research Collective creates a joint approach to solving complex problems. It aims to encourage and facilitate a collective approach to research that enables better outcomes for people living with MND.
The purpose of the MND Research Collective is to sustain hope through collaborative research and to improve the lives of people living with MND.
Our vision is to collectively accelerate our understanding of MND and fast track the discovery, development and delivery of effective treatments and improved care for people living with MND across Australia. The MND Research Collective was developed to tackle the question: how can we create better outcomes for patients through research?
The MND Research Collective is not a fundraising initiative. Rather it is a framework to drive collaboration and collective impact in research. Each stakeholder makes a commitment to contribute to the overarching plan of the MND Research Collective by playing their specific role and contributing based upon their capabilities and areas of expertise.
People with lived experience of MND are at the core of everything that we do. This is reflected in our Management Board which has an equal number of people with lived experience and researchers.
The MND Research Collective narrative is available here. This document provides more in-depth information around the MND Research Collective.
To truly ensure we are harnessing the full range of experience, guidance and opinions of the MND community, The MND Research Collective includes people with lived experience of MND through the Lived Experience Expert Driving Team.
Lived experience of MND can come in many different forms; you may be living with the disease personally, supporting a family member or friend through their disease, or have lost a loved one to MND.
The Lived Experience Expert Driving Team is currently accepting new members, if you're interested in joining you can learn more about the Team here and complete our expression of interest form.